For all my wanging on about this being a real time blog about having a brain tumour and what it’s like to undergo treatment, I’ve left it way too late to write this post, but then when I decided on a real time blog I
a) didn’t realise how little would actually happen during treatment;
b) could not predict how much it would affect my ability to concentrate; and
c) failed to properly acknowledge my fundamental laziness.
I began six, four-week cycles of temozolomide (a.k.a temo, TMZ, Temodar) chemotherapy on the 1st May 2018 and finished on the 15th October. Just two months later, I’ve pretty much forgotten what it was like. It feels like another lifetime. Not as distant as the life before the tumour, but still a world away.
There are little notes squirrelled away on my computer relating to side effects and procedures during each of the six cycles, so I’ll cobble them together here; partly so I don’t forget what amounted to one year and four days of treatment, and partly so I can continue to pretend this blog may be useful to someone about to go through the same experience.
As chemotherapy regimes go, temo is quite a polite one. It involves taking tablets for five out of every 28 days. No drips, no hair loss, no days of hanging around chemotherapy units. The Northern Centre for Cancer Care sensibly arranges all the temo appointments for the end of the day, so we don’t get in the way of patients who do need drips and more attention. Answer a few questions, check blood pressure and blood test results, you’re handed a bag full of drugs to take home and that’s it. See you next month.
Other brain tumour patients who had taken temo spoke of how toxic it was to the skin; that each capsule is packaged individually, to be opened with scissors whilst wearing plastic gloves and apron, and that the protective gear had to be returned to the hospital after use for safe disposal. It sounded like some serious Breaking Bad carry on, but in my first bag there were just a few normal looking boxes of tablets, so I asked the nurse why there was no hazmat suit for me. “Oh” she replied. “You only need that stuff if you have to melt the tablets, and if that was the case, you’d have been specially trained by the pharmacist.” This was patent bollocks as no one else had said anything about chasing the dragon, so maybe it was because all those people had their drugs given to them by their spouses, whereas I’m the sort of stubborn sod who does everything for themselves, and if you’re going to swallow something, protecting your skin from it is a bit redundant.
The relatively unusual thing I *did* have, thanks to my prodigious vomiting ability was the ultimate kick-ass antiemetic, Akynseo, backed up by an array of other no-puke treats. TedDansontron, you were a brick, but your dad’s here now to take over. Akynseo is a single capsule that should prevent sickness and nausea for five whole days. That is actually magic, isn’t it? (No, it’s actually 5 differentially digestible pilules within the capsule. I opened one to check this theory was correct and may possibly have dropped one of the pilules down the side of the sofa cushion. Certainly, I was more nauseous that cycle, but it’s my own stupid fault). As no one trusted even Akynzeo to prevent me puking, it was backed up with Cyclizine, which is a really stupid name for an anti emetic. Cyclizine can make you feel a bit spacey, and in my case daft and giggly. It made me feel like the floor was a bit unstable, so walk like I was on the moon. One time, I went in to our hall, which has sanded floorboards. This, coupled with the wobbly feeling made me think I was on a pirate ship and spend a good while snorting with laughter whilst holding on to the wall.
“Get back to the point, Poundshop Hunter S. Thompson!” I hear you cry. OK then. Temo needs to be taken on an empty stomach, and you mustn’t eat for a couple of hours after taking it, so received wisdom is to have it at bedtime. Again, a polite therapy. After PCV, which involved 11 days of drips and tablets, just 5 short days just flew past. Each cycle started on a Tuesday night and took a couple of days for side effects to appear. The first cycle was easy, the only problem was sleepiness. I went to bed on the Thursday night and pretty much slept through to Monday morning by which point I was right as rain.
Each cycle took progressively longer to bounce back from. Later cycles varied in the order and severity of the side effects, but in terms of discomfort, they were no worse than a hangover or a snotless cold for a few days. Each cycle seemed to be split up in to an acute phase whilst taking the pills and a few days after (although ‘acute’ is an excessively dramatic word), followed by another week or two of fatigue and weakness.
The ‘acute’ phase involved dehydration and aches and pains, followed by itching, nausea and light headedness as the medicine worked its way out of my system. That was all over and done with by day 9 or 10. Nothing earth shattering, nothing intolerable but pretty draining over time. I didn’t really notice how draining until after the 5th cycle, when at a check up with Paula, she decreed that six cycles would be enough for now, and I felt nothing but relief at not having to do the final three.
Even my mundane and not at all scary experience of temozolomide was more bothersome than most people’s (or maybe I just whinge more). When I asked at Brain Tumour Club about how others managed the aches and pains caused by temo, everyone looked at me blankly. No one else had had that side effect. Paula has never had a patient who’d got aches from temo, but happily prescribed a load of painkillers to see me through and it was all fine. Doctors know that chemotherapy can be rough. Everyone concerned is keen to relieve as many side effects as possible and make the ride as smooth as it can be.
What I’m trying to say is that chemotherapy, before you go in to it, seems terrifying. Yes it’s wearing and it’s never going to become anyone’s hobby, but it is entirely manageable, and when the time comes for me to do it again, I will do so without any qualms or dread.
As with radiotherapy, the final treatment was an anti-climax, but without the intensity of ending a daily routine; more in a leaving everything up in the air sort of way. Pick up the pills and pootle off home. See you at some point, people I’ve barely got to know. Probably when the tumour starts to grow again? What’s next? No idea. All I do know is that when I went to the kitchen to take my very last dose of temozolomide for 2018, the orchid that had been masquerading as a stick for at least a year, bloomed. Three months later the same flower is still going strong. If you believe in signs, you have to take the bad omens along with the good, so I’m reluctant to read anything in to it, so I’ll just leave this photo of it here instead.